This wasn’t the post I was going to write when I planned to mark the one-year anniversary of going to the hospital for my stem cell transplant. This was going to be a post about how much has changed since a year ago today, on the eve of entering the hospital for one month for an autologous stem cell transplant. I was planning to have people over to celebrate and watch the new Game of Thrones and celebrate my half-birthday, with my cats dressed up as dragons.
I want to preface this by saying that I’m OK, and, as far as I know, cancer-free. Yet I’ve been having some problems breathing and spent seven hours at MSKCC urgent care on Monday evening. I never wanted to have that hospital bracelet on my wrist again. The diagnosis was walking pneumonia, yet I still can’t breathe and there’s still a little doubt as to what’s wrong. I’m seeing a pulmonologist.
This started last Saturday, when I noticed it was a little hard to take a deep breath. It worsened throughout Sunday, and by the time I climbed the two flights to my apartment after an Easter feast, I was coughing, panting and gasping for air. (And it wasn’t just all the ham, sausage, potato salad, deviled eggs and desserts I’d just ingested that slowed me down.)
The problem was I’d signed up for a cycling class Monday morning and it was too late to cancel without incurring a $20 fee. I went to class and informed the instructor I couldn’t really breathe—problematic for a cardio class. He told me I could reschedule, but I just took it really easy through class and somehow made it. I scheduled an appointment with a general practitioner close to work and left for a 3 pm appointment. I didn’t come back that day.
After I saw the doctor around 4, and told him about my medical history, he wanted to send me to urgent care to rule out a blood clot. (That was before I told him I had already had a pulmonary embolism, and then he was certain we had to rule out a blood clot.) He wanted to send me to NYU Langone, but I thought I should go to MSKCC since they knew my history and since I have a pulmonary function test slated for this Friday. In retrospect, I realize this was a mistake, but…hindsight.
I arrived at urgent care around 5, and I’ve never seen it so busy. I knew it would be a long wait, because a blood clot could be serious, but I was still mobile and feeling OK and it was a ruling-out situation. The doctor there listened to my lungs and said it was good that the other doctor wanted to rule out a blood clot. I had a CT scan. I got out at around 1 am. The good news is that there was no clot. Officially, she said there was “something” there and they thought it was pneumonia. Not as much info as I would have liked after 8 hours, but she told me to call my MSKCC doctor for more info about the scan the next day. I got Levaquin antibiotics and took a cab home.
I was surprised at how much having that hospital bracelet on my wrist affected me, after being free of it for so long. It was like shackles. I was sad and scared, not knowing what was wrong. For nearly a year and a half, I was in a zone—keeping my head down and getting through something. After getting back to “normal” life, I felt ill-prepared to deal with tests and the pain of the contrast injection and the search for a good vein for an IV. My armor was rusty, my coping mechanisms as buried as my beat-up veins.
Because Mad Men is on again, I thought of the words of Don Draper in season one, “It will shock you how much this never happened.” (I feel like that about the last few seasons of that show. I can barely remember the plot. Will it ever get good again before the end? But that’s another post.) It’s not that I feel like cancer never happened, it’s just so separate from me. It’s lucky, I realize, that it hasn’t had many lasting physical effects. I’m surprised when I have a follow-up appointment. That might be another coping mechanism.
During the months of depression after recovery, as I tried to adjust, I was in a weird middle area—no longer a cancer patient yet not ingrained into regular life yet. I don’t know if there’s a way to strike a balance.
When I was discharged Monday, the doctor said it was probably walking pneumonia but she wanted someone else to look at the CT and I should talk to my doctor before continuing with the Levaquin. I called Tuesday but didn’t hear back, so I took the antibiotic. On Wednesday, I called again, and they said it was “atypical pneumonia.” My general practitioner wanted a follow-up on Thursday.
Wednesday night, my elbows started itching, followed by my ankles. Then blotches appeared on my cheeks. A trip to the ER was advised by my doctor if anything changed or happened, but I wasn’t interested in spending another eight hours in urgent care. I went to sleep and my rash had disappeared by morning.
The doctor sent me for X-rays on Thursday, and though the front desk told me I could go to any location on the sheet, only one did X-rays. After huffing all the way across town in the cold, I broke down and took a cab to the other location. My breathing wasn’t getting any better, and sometimes, I would wake up gasping at night. I would be panting so much by the first flight of steps that I could hear my downstairs neighbor’s dog rush to the door, thinking I was another canine.
Later that day, I had an appointment with a pulmonologist. While sitting in his waiting room, the tops of my feet started burning and a rash started spreading up my legs. It was the end of the day, and I rejoiced when the other patients left so I could scratch at my ankles to my heart’s content.
This doctor took me off the Levaquin because of the rash, and prescribed a Z-pack. The X-ray didn’t show any pneumonia, so it’s a mystery why I can’t breathe. He said something on one side is elevated, but he wants to see the CT scan. I came home and slept for 12 hours.
I called Friday and had to fax a request for a CD of the results. My boyfriend went to the mailing center (presumably to use a time machine to go back to when fax machines were relevant) to fax a form that I printed out and then he switched his work hours to go to the hospital to pick up the CD and take it to the pulmonologist’s office. Still, it was hours before the weekend, and now I must wait.
I cancelled my plans and have been trying not to breathe too deeply. My boyfriend thinks I sound a bit better, but I think I’ve become better at not exerting myself. The real test is tomorrow when I am out and about.
So here I am, a year after packing my bags and checking into the hospital for a month. The experience seems so far away. Yet spending this weekend cooped up, convalescing and taking it easy reminds me of all that time I spent in various stages of illness, in a limbo, waiting to be well again.
There’s no finite amount of illness you have in your life, but I’m mentally done. Logically, it doesn’t make sense, but just one more day not on my terms feels like it’s being stolen from me.
I was speaking to someone about cancer this weekend after hearing a few other experiences. You always try to focus on the positive, but the thing is that there’s no “good” way to have cancer. It’s always terrible and it’s always supremely unfair, no matter how old you are or the circumstances. While it’s good to be positive, it’s also important sometimes to acknowledge this, especially as I supposedly had the “good,” easy-to-cure cancer.
I have had a lot of time to think—more time than I would like—after being woken up gasping for air this week, or waiting for the itchy rash to calm down. There was more I wanted to say, but I’m still not sure how to put some of the things of this past year into words.
As for the breathing, I am, of course, worried. I hope it’s nothing chronic or serious. Right now, all I can do is continue to make my cats’ dragon wings.
Though I cancelled my get-together, I am still making the dragon costumes. (If you’ll recall, I also made them Tortuga costumes for the Breaking Bad finale and they were the cutest disembodied heads on turtle shells that you’ve ever seen.) Tonight, I’ll put aside my pulmonary worries and instead focus on the fate of the seven kingdoms and Don Draper.
